So I haven’t written in a bit because I have been waiting to find out what my next line of treatment is. ( Thank you to everyone who responded to my last post about med change). Ibrance stopped working after a year and a half and Everolimus didn’t work at all. I am waiting to find out if I qualify for a trial that compares Keytruda and Trodelvy against just trodelvy. I am waiting for liver biopsy to come back. I have been off of all meds for 2 weeks. My ascites has come roaring back. It’s super uncomfortable and I’m just so angry and starting to get depressed. Today I had 7 pounds of fluid drained from my stomach. It’s already coming back. 🙄. Doc says chemo will help. I’m so uncomfortable that I want chemo to start asap. That being said I’m also scared to start it. I don’t want to be sick or to lose my hair or to have to quit work. There it is. I am scared, angry, and depressed. I’m not usually like this. I have my days but I can pull myself out. I know that half of this whole cancer thing is a mental battle. I feel like I am losing ground. Thank you for reading this super long whiny post. Here’s to better days
Carla
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As I have only begun this mbc journey a couple of months ago I have no advice to offer, but just wanted to get in touch and say, your message was not "whiny" you are dealing with one of the hardest things I can only imagine at this time. You are entitled to express your feelings in any way that may help you. Take it easy on yourself and I'm sure your resilience will re-surface.
Thanks Kiwi 67. It just doesn’t feel good to be so down about stuff. I would much rather be enjoying what I have. I have a hard time with that when I’m physically struggling. I’m sorry you are having to deal with this cancer stuff and hope you have a great day!
It is perfectly natural to be angry, scared and sad. The pain and suffering from loss of health, identity and work you enjoy is very hard. Trying to move forward while dealing with ascites is not easy. Sometimes it can feel like our world is narrowing. However there is always hope
It sounds as if you are about to start the same trial I will be starting. I had progression in the liver. I am also in a two week, no meds, washout period. The biopsy is being scheduled. Please see the recent previous postings on this site regarding Trodelvy. People on both drugs say that they have been able to successfully manage through. I am very hopeful about this trial and the power of these newly developed Antibody-drug Conjugates combined with Immunotherapy to knock the cancer back hard. One oncologist referred to ADCs as smart bombs. A few short years ago this trial would not have been an option for us and not available. Trodelvy was only FDA approved in 2020, 2021 for Triple Negative BC and recently for HR+ MBC. I have a lot of hope for this trial and other trials. Wishing you the very best and success with this trial.
thanks for responding! If we both end up on this trial maybe we can compare notes. I am waiting for the liver biopsy and am signed up to start on Friday if all goes well. My doc said cold cap wouldn’t work with this chemo. It’s silly but I am freaked out about losing my hair. Such a small price to pay if it gives me more quality time. I am very lucky that I have meds to choose from. Thanks again for responding!
I dont think its silly at all to be freaked out about hair. Why not look at wigs online or in person at a store or cancer center, l bet you or someone can figure out photo shopping you with wigs. See if you can have a light attitude for just a half hour or so.
Definitely let’s connect. The hair loss is not trivial. It represents the loss of who I was and how I moved in the world. However I will proudly display my new bald head since it represents moving cancer treatment forward. I will happily discuss the miracles of modern medicine with whoever is interested.
Just found out I was put on the Trodelvy arm of study. No immunotherapy this time around. I am disappointed but hopefully it works. Let me know how it goes for you!
Thanks for letting me know. I definitely will. Even without the immunotherapy piece this is an exciting new treatment with lots of promise. The Trodelvy will knock that cancer right back down and keep it in control. My oncologist did tell me the downside of the Keytruda is that it may also attack healthy organs such as the Thyroid. A little scary so I won't be disappointed if I don't get the Keytruda. It also doesn't mean Keytruda can't be used in the future once the trial ends. Best of luck and fingers crossed for you!
I had IV chemo namely Abraxane and I lost my hair. It was the only question I asked when I was told I had to have chemo! But I bought a wig (which was the same as another lady was wearing in the chemo room! We both had good taste obviously) I had no real problems except fatigue and I’ve been stable since (2016) so I’m resolved to never again let my vanity get in the way of treatment choices. After 8 years I remain on my third line of treatment so all these things that you’re sharing are interesting to me and I must say I’m glad that so many new drugs have come through successful trials since I first started. I’ve been told I’m ineligible for many trials due to taking Afinitor but maybe that will change in the future.
So thanks to all of you who are going through the trial process and potential travails that can occur. Your sacrifices help all of us. 🫶
Thanks for the response. I’m so happy to hear that you are doing so well. I know I have to pull myself up by the boot straps and just get on with it. I think the hair thing is like when I had the mastectomy. Like wow I am losing body parts. It’s kinda freaky. I got over losing my breasts and I will get over losing my hair. Thanks for sharing your experiences. It helps a lot.
We can all give you support and we all are connected with the same crappy health issues that test us every day. That is the only thing that makes me stronger and makes me want to fight this because "it" is playing on our weaknesses and think we will give in. Don't let it take over. Try to keep your chin up and be determined to fight. Sending you positive energy and warm hugs. Blessings
Please do not get down on yourself for feeling the way you do. I had all of the same feelings at various points in my treatment. And I must say, losing my hair was one of the hardest things for me to deal with. It is NOT trivial...it represented one more thing stripping my identity from me. Did I loose myself? Maybe for a minute...smile. I embraced my bald head..decided that I looked like a warrior. Later, I found a wig. Not one that resembled my own hair but something more beautiful! I have grown much of my hair back, after years of not having it due to many changes in treatments. I now have striking light and dark grey hair. It matches my blue/grey eyes.... Be patient with yourself, dear one, and give yourself permission to feel all of the feelings you have. Love and Peace,
It’s a horrible place to be and I hope things turn around for you with your trial(s). You’re in a place where many if not all of us will be at some point or many points in our respective journeys and you deserve all our love and support. I met my mums gardener the other day after a gap of 18 mths. He’s a fireman who’s now leukaemia free after 16 yrs. he told me when I first started with stage 4 that he had just aimed to get through the day and had a daily routine at 7am which he did no matter how bad he felt - crudely - shit shower shave and it’s these little routines that gave him a sense of control. I’ve taken it to heart to help me take this journey day by day when I’m in rough times. And also this quote of optimism which I also live by - “recognise your inner strength. Flowers are often pulled from the earth. They still have the roots and ability within them to regrow and you do too”. Hope you find some with things that give you pleasure until better days come along. My latest is I’ve just started using a free bird sound app ( Cornell univ Merlin) and love it as it distracts me for hours til I feel whole again. And I’m learning something new.
Carla, you are so not whining. I know just what you mean though. I am currently on Everolimus and Exemestane (first scan on this tomorrow) but when this fails I will be moving to IV chemo and I am so dreading the hair loss. I don’t even like myself with short hair, and while I am full of admiration for those who go brave and bald, I won’t be able to do that. When I had chemo for my primary cancer after a double mastectomy, I was much more upset about the hair than the boobs. I am determined to get the nicest possible wig and look into other stylish head gear when it happens. It is great that you are going to go on Trodelvy, I hear promising things and hope it becomes available to HR+ patients in the UK soon. Good luck with it and hope you will feel in better spirits very soon.
All the best with your scans! I just started Everolimus yesterday and hope it works for me, as I hope it is working for you too. After a couple of weeks off all my previous meds - today my lower abdominal internal organs feel "sensitive". Trying not to worry while simultaneously wondering what the heck can be causing this atypical sensation! It sure is a roller coaster of a ride - without the fun lol
i’ve been on this journey since last October and I totally get what you’re saying just trying to be strong be positive and I can understand your frustration completely… Sounds like you’re a strong person and I know it’s hard to dig down deep, when life throws you another card… My thoughts are with you! This journey is scary unpredictable and basically it sucks. I’m sending it out to the universe and I know you’ll be strong. You have people who love you and support you and you do have a good mental attitude . Hugs to you.
oh Carla, I totally get not wanting to have these feelings. But how can you not? It sounds like it is a painful time, both physically and emotionally. The first year I was diagnosed, I struggled with grief. I desperately just wanted to live my best life in the time I have. But eventually I realized I also had to grieve. Sounds like you have always found a similar balance. This won’t be any different. You’re just not there yet.
sending good wishes for your next treatment line. I know lots of people who seem to feel their best on IV chemo.
I have a dear friend who started Trodelvy about a month ago and was not told about the immediate hair loss and was not prepared to deal with it so quickly. She is a very spiritual person and deals with things by always being thankful which I admire but find it hard some days with MBC although I am thankful to still be on my 1st line treatment and still have a lot of my hair. Praying that this drug works for both of you. Treat yourself to some time out with a friend or family to look for a nice wig or head covering. Getting out for a bit each day always helps me and has gotten me through some tough times, especially with my original journey with double mastectomy, months of chemo and radiation and 6 not so successful reconstruction related surgeries. Having something to look forward to each week as I was able got me through, especially mentally. That and being able to share with close friends and family. Wishing you many bright spots in the days to come. Big warm hug. You can do this.
You’ve got this! I’ve done several lines of treatment as well as clinical trials and after ibrance nothing worked for very long. I allow myself to wallow in self pity for a few days each time. Then I force myself to get up and get back to living whatever is left of the life I have. I want my kids to remember me as a fighter.
When you’re physically in pain it’s obviously hard to keep going. Despite a lifetime of being the kind of person who didn’t even like to take Tylenol , I’ve found that if I stay ahead of the pain, it helps with my mental state. As a cancer patient, we’re able to get some pretty strong drugs
It’s a tough journey we are on so you’re entitled to be enraged, whiny, sad, or whatever it is that you feel.
I wish you strength to keep fighting. We have no choice but to keep doing so. Know that you have your sister warriors here to lift you up if you need it.
You are not being whiny. This site is the perfect place to express what you are feeling. You are sharing with women who understand the Rollercoaster ride which is mbc! Keep posting and update us.
it’s not a whiny post at all. All are feelings are important. I’m sorry to are going through this, it’s a tough journey we have to make. Yes a lot of it is mental. I quit working when I found out and still I would like a little partime job, but my body says no and my mind says yes! But hubby says no so the no votes win. 😕. We all are here for you and what I would do without this group is a lot of support. I went to a support group here and after two meetings they weren’t so much support if at all. My best to you!
Good day! I've been MBC for 2 years, and have experienced many challenges mentally and emotionally as well. Youre in a point in your journey where theres a change and THATS SCARY! While you have to be patient while they figure out whats next I say concentrate on what your actually feeling. We already know how tough you are but its ok to be scared, and angry, and do the what ifs - I let myself freak out for a little while then when the meds start be strong and hopeful. I'm just trying to say you got this! Good luck to you!!!
Hey Sister in the struggle, I hear you! All I can suggest is to take this trip one day at a time. It helps me to not think about the end but to make today count. I have learned little things matter. So go ahead whine, scream break something. But remember to give yourself a lot title grace. This is a big battle we are fighting! XXX stay strong 💪🏽
Dear Carla, I am so very sorry you are going through all of this. MBC is definitely a tough journey and it is easy to become angry, sad and depressed about the disease itself and fears of side effects from treatments. We have all been there and you should never feel guilty for feeling this way or needing to vent. You are going through a lot right now and have many questions and concerns. Please know that you are not alone in this fight and that hugs and prayers and positive vibes are being sent to you. I hope you can get on a good treatment that will work for you and not cause a lot of side effects. Hang in there. Sending hugs
Hi Carla, I understand how you are feeling. Losing ground and not feeling well is so scary, and my heart goes out to you with wishes and prayers of healing and betterment. Have you tried Xeloda? It’s easily tolerated and works on all types and sub types of breast cancer. Better days are coming your way once you get in your new protocol. This is a miserable disease and all we can do is trust our doctors and manage the best we can. You are not alone, many of us walk this road along side with you. Take a deep breath, better days are coming with your new meds, and you will get another reprieve from this disease. I am wishing a quick turn around for you, it will happen! Take care friend, and if there is anything I can possibly do for you please let me know. Gabi.
Sister, and yesss Warrior😇: My heart goes out to you. I had to dry my eyes. You have a right to feel everything you are feeling. When it rains 😢wait for the sun, and rainbows to appear, they will.😊I will keep you in my prayers. I am now NED almost 15 years. I hated having to lose my hair, but when it grew back, I remembered the 3-4 hours it took for me to make it look beautiful. I remember if it didn't look good I wouldn't go out🙄. Well I now refuse to spend that time 3 times a week, and I have a variety of 10-12 beautiful wigs for every occasion, and I know how to cut, and style them😀. I try to wash/condition my natural hair once a week, and corn braid it back, so my wigs will fit on my head . Strangers ask where do you get your hair done, and I whisper "I'ts a wig"😳. Well, then I tell them where I purchase good wigs for under $15-$20 wigs. There are workers in some of the Beauty Supply stores who will cut your wig for $5 or a tip🙂. Just bring a picture of your hair style, and color. They will match it. Several years ago I took my sisters girlfriend Sandra who had lost her hair after having chemo to one of my wig stores. I told her to bring a picture of what her hair looked like before chemo. I still remember how happy😇 she was smiling ear to ear after the wig was cut, I remember her swinging her hair in the wind when we parted. with a big hug. She went directly after to show her dad, and son. Her dad , and son were shocked, and her dad said' Baby OMG your hair grew back really quick" LOL. Call me crazy but we all just want to live our best lives. May the GOD I serve work all things out in your favor.Amen!
Carla, I'm so sorry you've had to go through that extreme discomfort. 7 lbs is a lot of excess fluid. My heart goes out to you as I completely get how you're feeling right now. My liver and bone mets progressed recently and I just had to switch to Afinitor/Tamoxifen. But I ended up having a couple of weeks off meds, for a combo of reasons, and my body feels like it has regressed in that time since my scans! So it's been very frustrating . I've been half as active as usual and just don't feel quite "right". I've struggled to keep my usual positive spirit too. I saw that now you know you'll be taking Trodelvy next so I really hope it makes you more comfortable and does what it's designed to do!
Oh how your message resonated with me. I'm so pleased you put out this post. It shows that no matter how much strength we have sometimes we feel we just cant pull ourselves out of the whirlpool!You are so right that this disease not only takes its toll on our physical health but also our emotional well being.
What can I say that you don't already know? Perhaps... Love yourself .
I had to look up Ascites. On top of everything else you have this. See!?!?! People out there who don’t have it, have no idea what this “living” with metastatic cancer is like. And the complications on top of complications.
I am not in your body or in your situation, but I do know that you have every right to complain. And what better place to do that than here?
I am sending you hugs from Down under. (Australia) I have been on Ibrance for 5 years now. And besides it saving my life, keeping me “Okay” even though very tired, sore and not my full self, I know I’m lucky., But sometimes I wonder if this is really living.
So go figure! We all have our needs and hopes and wants. And you my dear deserve to be able to WHINE!!!!. Chris from Melbourne.
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Striving to walk again, more progression, radiation and Trodelvy advice and prayers most welcome. 
Need to tell you.
Stage 4 metastasis 
I need help !!
Hi, I’m new here. 10 years and 8 Months in remission and out the blue a recurrence. I’m loving this group. Thank you. 
